A Busy Week

You probably spotted that my holiday diary ended early. I was aware that it was getting both repetative and gloomy. The Wednesday and Thursday entries would have followed suit so I didn't waste time writing them although we did have a nice evening on the Wednesday when David and Sarah, the farm owners, came over with a couple of bottles of wine and joined us for the evening. So in summary, not the best holiday. The travelling issues, wheelchair control and exclusion from so many activities combined to make it a rather depressing experience if I am completely honest.


Last week was a busy one by my standards with three outings in as many days. On Thursday evening the boys went over to my sister's to stay the night and we took the opportunity to go to the cinema to see The Inbetweeners movie at Kingston. We got into the TV program during its third series but have caught up on most of the others recently on CH4 reruns. Suffice to say it's not for those easily offended but it is possibly the funniest 'sitcom' in years and probably an insight into our boys social lives circa 2019.

Thursday was my Kings Hospital visit; always a chore, never a pleasure, even more so now with travelling difficulties. Previous checkup visits have been coordinated with the drug trial visits allowing me a) get an expenses paid taxi to save Tracy having to come and b) minimise the number of trips during the year. But this week was too early for the trial and also I might have needed help getting between the lung function unit and the neurology department.

The visits are a pain in the arse and if it hadn't been for the fact that they had ordered a new ventilation mask in, I would have cancelled it. The Palliative Care Consultant is perfectly pleasant but it's simply a chat and maybe a prescription to deal with the latest symptom; this time it was saliva control. But an email conversation and a fax to the GP would achieve the same in 15 minutes. The lung function tests were just a blood gas test and downloading the data from the previous nights oxymetry test, followed by a 10 minute session with the another consultant to discuss the results. Again, most of which could be achieved using the post and email. The whole trip takes over 4 hours. No significant changes in results, which I already knew but the new mask will hopefully allow me to use the eyegaze when I eventually need it. Next visit scheduled for December although if nothing has appeared to have changed, I might cancel it!

On Friday we took the boys to see Harry Potter at Kingston's 3D IMAX. I think this is only the second one of the series we have seen at the cinema and it was pretty good, although it was fairly similar to every other HP albeit with a bigger budget. Visiting the cinema in kingston is pretty easy, particularly after I discovered the fire exit route leading directly to the disabled parking area. It avoids the several hundred yard journey on the pavement to the main entrance and the two lifts inside. Tracy went ahead to get the staff to open the fire exit doors when we arrived and they are equally helpful after the film.
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